Our Little Kaidence

Wednesday, June 26, 2013

This write up is close to our hearts for it is how we have always felt Kaidence's journey came to be. However, Kaidence has two little boys and their families that were also "Brave Little Souls" wanting to unlock the love in peoples hearts. Truly.....they have succeeded!The Brave Little SoulBy: John AlessiNot too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," she asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through her suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love.Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer.Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever.It was good. The world was a better place. The miracle had happened. God was pleased.

Tuesday, May 7, 2013

KAIDENCE STEPHENSON Kaidence in the hospital during her second transplant surgery last fall. Courtesy photos

BY JENNIFFER WARDELL

Clipper Staff Writer

BOUNTIFUL — It’s taken the strength of three hearts to keep the light shining in six-year-old Kaidence Stephenson’s eyes.

The little girl, who loves dance and her three brothers, had her first heart transplant when she was just 10 months old. Her second came late last year, after a sudden bout of coronary heart disease attacked the first heart she had been given.

These days, Kaidence is looking forward to the upcoming summer season. Her mother Shauntelle is grateful for the gifts of two loving families whose children are no longer around to experience the same thing.

“It’s a very bittersweet thing,” said Shauntelle. “Kaidence is doing all the things a little girl should be doing, and we’re overwhelmed with the opportunity the donor families gave us. At the same time, we’ve gotten to know Kaidence’s first donor family and the sweet little boy who will never have those same opportunities.”

Kaidence’s own heart first failed her when she was only a few months old, and she was put on life support after becoming dangerously ill during a family vacation. She made the news later that year when she became the youngest patient in Utah (at the time) to be implanted with a Ventricular Assist Device, a heart pump that improves blood flow. The VAD kept her alive for 47 days, until she could be implanted with a new heart.

Shauntelle and her family remain in contact with the family of the little boy whose heart saved Kaidence’s life. The Stephensons have pictures of him, and Shauntelle thinks of him often.

“There’s such a personal side to it,” she said. “I think the relationship has been healing for both them and us.”

Kaidence thrived on the new heart, growing up healthy and strong. Shauntelle became involved in organ donation advocacy and watched her daughter thrive.

“If you were to see her on the street or playing with the other kids, you’d never know the difference,” said Shauntelle in an interview with the Clipper a year after the first transplant. “When I look at her, it’s hard for me to see the sick little girl she used to be.”

When Kaidence turned four, however, a surprise bout of coronary heart disease put the little girl back on the transplant lists. While the Stephensons waited for another miracle, groups such as Bountiful’s Creative Arts Academy helped raise money to defray some of the immense medical costs faced by the family.

Last fall, Kaidence received the heart she needed. Though a bad reaction to some of her immune suppression medication meant that she started 2013 sick, she’s since recovered and is back to dancing and playing with her brothers.

“She just had a biopsy, and it came back and looked really nice,” said Shauntelle. “We just have to keep her healthy.”

Though concerns about germs have kept her out of public school before now, if everything goes well the family plans to let Kaidence enroll in school this fall.

“We went and walked around the school,” said Shauntelle. “She’s so excited.”

Shauntelle has written to the family of Kaidence’s second donor, though they haven’t yet received a response. Even if they never do, Shauntelle will keep the memory of their gift firmly in mind.

“We know what it took,” she said, tears in her voice. “They gave us the gift of life.”

Thursday, March 7, 2013

I cannot believe that I remembered the password for this blog!!!! I have no words for my lack of blogging, so shall we just move forward???? Great! First off, according to my last post....Kaidence is still in the hospital but obviously, she is not. She came home on August 29th! See, this picture is proof!

Kaidence came home with a new heart and to a new (temporary) house while our house was waiting to be built. She recovered very well and I was pleasantly surprised with how well it all went. In December I noticed a decrease in energy, eating and an increase in GI issues. She became weak, stopped doing dance and school and really had no quality of life. Over time she started quickly loosing weight. There was a 2 pound weight difference between her (days away from turning 6) and my skinny 2 year old. We started reverting back in our eating, taking medications and speech. It wasn't until a few weeks ago and 3 hospitalizations after that we figured out that it was her Cellcept medication that was making her so sick. It causes severe GI issues as a side effect. We had the same issue with the first transplant as well. Her vomiting and reflex caused the voice issues to return.

I don't want to post the sick pick of her because it's a little too disturbing to see my daughter all skin and bones. She weighed in at 33 pounds, that is down from 41. But she looks better in the other pics so I will post those.

She was hospitalized the week of her birthday and we celebrated her 6th birthday up at the hospital.

Her brothers had influenza and were not able to see her on her special day but her good heart buddy Matthew came up for a tea party and to test out her new Easy Bake Oven. They are too cute together.

She said it was the best birthday ever. She also got a new scooter and she took it for a few test drives through the hospital. She also had a few 'after hour' races with some nurses. She loved it!

Here she is......on her 6th Birthday! That is the girl that I have missed. The one with the big smile, sparkle in her eyes that could talk your ear off. She had been gone for so long that it feels exhilarating to have her back!

Currently she is doing fantastic! Her favorite thing to eat is Ham sandwiches or she loves just bread with Miracle Whip.....Nasty! Whatever gets her eating again. We are still tube feeding her at night to get her weight back up. We are getting there. She currently is 36.8 pounds. Slow but progress. Regardless, she now is giving her body enough fuel to give her energy. Today she is playing with her friend Miss M. This is their first play date since her transplant. Needless to say its been a long winter.

This Saturday, Kaidence will perform in the ballet of Alice in Wonderland as a tea cup. She is thrilled and her costume is gorgeous. We have only been back to dance for about 2 weeks but she caught up quickly. I knew she was feeling better when she was dancing down the hospital hall and singing. Always a sign for me. I will post pictures of her performance (I really will!)

Until then.....Will you please do me a favor????

This is a friend of mine who has a beautiful family here on earth and a darling Sunshine Angel boy waiting for them in Heaven. They are looking to adopt 2 children to complete their family. Will you please support this great cause? There are pick up locations all over the US. If you are in the area you can drop your shoes by my house or at one of the many drop off locations.

Join as as we collect 40,000 gently used but still wearable shoes THIS MONTH to raise the funds needed for the adoption of two children. We can take ANY type of shoe - boots (we LOVE boots, since they pay us by the pound), flip flops, high heels, tennis shoes, dressy shoes, sports shoes, cleats, anything. For men, women and children. As long as there aren't gaping holes . . . and they match . . . we'll take them! You declutter, we earn much needed adoption money AND the shoes go to third world countries. WIN, WIN and WIN!!!

Tuesday, September 25, 2012

Yes.....we are still here and Kaidence has been home for awhile. She is doing Fabulous......We have been busy with the move and new heart appt. I promise to get a post with pics of her transplant soon! Know that things have been better than ever expected and I will post soon. Thanks for checking in!!!!

Friday, August 17, 2012

I have a bunch of pictures and videos to post but this place keeps me so busy...Kaidence has been very sleepy. We were able to force her awake yesterday long enough to go on 2 walks. That was an order from Dr. K! The crazy thing is that her chest doesn't hurt her (except when she coughs) but it's the Picc line in her leg. It has made her ankle and foot swell.

Todays chest x ray looked a tiny bit better. She still has a lot of extra fluid that she needs to get rid of and so today we will take more walks. Her echo also looked better today and so they are decreasing her Milrinone! She is starting IVIG (good antibodies) to help her fight off this Parainfluenza. Overall, her cough is getting better. They seem pleased with how well she is doing. The thing holding us back are her lungs. I must add that she is SO PINK! Her cheeks are rosy, I cannot stop touching them because I think she must have a fever with cheeks like that.

I love seeing all the staff that stops by to see Miss K after they learned of her getting a new heart. They are so excited for her. I am so grateful that she is surrounded by those who both care for her and love her as well. To all of you that have dropped things off for us....THANK YOU! You are so thoughtful! Thank You for taking such wonderful care of us. To my family and my hubby who are home packing up my house while I sit with K.....I couldn't do it without you. They have been wonderful to care for my boys, house and the extra bonus of packing for a move!

To all of you who have followed this blog....we are grateful for your many prayers over the years, your kind comments and just knowing that you were here for us. Some of you we have met but many we have not. Thank you for putting your heart into my little girls journey.

Wednesday, August 15, 2012

Today has been so busy.......Kaidence had a great night. After being extubated at 3:00 she had to wait until 8:00 to drink. I think that she asked me every 5 minutes what time it was. At last she was able to drink and drink she did! Last night Kaidence woke up asking for the "game basket for when she got her heart". Back in December we were given an incredible basket full of games, gift cards and candy. We told the kids to save it for when K got her heart. That way we would have something fun to do together at the hospital. Sure enough, Kaidence (drugged and all)went through that basket last night and she was so excited. Today she has been a little sleepy. It's funny because she will open her eyes, try to sit up and ask to play a game. Then she is asleep within 10 seconds of that. I promise sweet girl, you will have plenty of time to play all those fun games!

Today she needed to go get a new picc line behind her knee because the one in her arm needs to be removed due to the blood clot. They are also planning on pulling 2 lines in her groin and 2 lines in her neck. She has spent the whole day sleeping. Dr. K, her surgeon wanted to have her up and walking today but that is unlikely since she is still sedated from the procedure. Also, she has an effusion on her left side because Dr. K was unable to get a chest tube in due to scar tissue (likely from the artificail heart 5 years ago). She is pooling blood in on that side but they are hoping it will be absorbed by her body. She still has in 3 chest tubes but she is dong well with her bleeding. Today she also recieved a blood transfussion (thank you to all who donate blood)!

This afternoon her aunts and brothers came to see her. They held her hands but she slept the whole time. Her aunts decorated her room and her brothers brought her roses from Angel Grandma's (k's namesake) garden.

So sorry this post is all over the place. Lots going on and little brain power left in me. My heart and mind have been with the family who gave us this heart. My prayers are for them. So much gratittude for saving my childs life as their world crumbbled around them. Please continue to pray for them. Much love to you all......

Slide Show

About Me

I spent 127 Days at Primary Childrens Hospital in the PICU. I was born healthy but became ill after catching a virus that caused my Cardiomyopathy (an enlarged heart). My heart was not pumping and I was dying. We were granted special government permission upon emergency use to implant the "Berlin Heart" an LVAD (Left Ventricular Assist Device) for babies. This would give me more time to wait for a heart. I was the first patient in the state of Utah to receive this device. I received the experimental device in November 2007. It saved my life and I received a heart transplant December 2007, two days before Christmas. My new heart has given me a new chance at life and I am forever grateful to the fammily that gave me my "Angel Heart". Today I am 5 years old and awaiting a second heart transplant due to severe Coronary Artery Disease. My family and doctos were shocked to learn that I needed a new heart once again.
Our little Kaidence is a tough fighter. Our little Fairy of Faith.
This blog documents her Journey of FAITH!